Rob Miani joined the MMRF team as Chief Financial Officer in 2016. Most recently he was the Vice President of Finance and Corporate Controller of Aptuit, LLC, a global contract research organization providing integrated early discovery to mid-phase drug development services in the pharmaceutical industry. Rob has over 20 years of leadership experience in the private and public sectors, holding managerial positions in the renewable energy, private equity, Internet and technology industries, including Davenport Newberry, Oak Investment Partners and INT Media Group. He began his career with Arthur Anderson LLP in the Assurance and Business Advisory Services Division. Rob is a CPA and received his BS degree in Accounting from Fairfield University.
Surviving Multiple Myeloma
On a recent trip to San Diego, Deb and I found a wonderful little area called the “Cancer Survivors Park.” This park is one of many throughout the country donated by the Ricard and Annette Block Cancer Foundation. One of the park’s purposes is to remind everyone that cancer does not mean death. Rather, the parks are tributes to the living.
While walking around the park I started to think about what it means to be a cancer survivor. When can you say that you have survived cancer? Knowing that multiple myeloma is incurable, I have always said that I am surviving cancer, not that I am a cancer survivor. To me, that means that I am surviving, and surviving quite well, despite having multiple myeloma. It also means that, no matter what, I will continue to survive.
So, can we ever say that we have survived multiple myeloma? With the treatments that have emerged in the past few years, our prospects of living for many years is better than ever. Although multiple myeloma is still considered to be incurable, it is very much treated as a chronic disease. Today, because of advances in treatment, we may not be completely cancer-free, but we are living with myeloma longer than ever before. In the past few years the life expectancy of myeloma patients has tripled.
Because of the ongoing research, someone diagnosed with multiple myeloma now can, and should, expect a deep and long remission. And yes, those of us who have lived with multiple myeloma for several years do dare to dream of some day being cured. Currently, the prospect that a cure for multiple myeloma is just around the corner is better than ever.
Even so, this brings me back to my original question, when can a multiple myeloma patient, or any cancer patient for that matter, say that they have survived cancer? An article in the Fall 2017 edition of Cure magazine entitled “Defining Survivorship” stated that the definition of survivorship is changing to reflect the fact that patients are living longer with their disease. The author, Jen Sotham, wrote that the accepted medical definition of survivor was originally applied to someone who had been disease-free for at least five years. She explained, however, that with such variability in the course cancer can take in individual circumstances, that criteria may no longer fit.
The Office of Survivorship in the National Cancer Institute provides the following definition of a cancer survivor:
An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.
According to this definition, all multiple myeloma patients are survivors. But the definition also recognizes that our caregivers and others close to us who have been affected by our cancer are also survivors. As we all know, we have not been alone on this journey.
What does it mean to be surviving cancer? To Deb and me it means living life to its fullest. That doesn’t mean that we try to cram as much as we can into each day. Rather, it means that we try to enjoy and savor every minute. It means spending quality time with friends, family, and those who mean the most to us. It means traveling to places we’ve always wanted to see and returning to our favorite places. It means spending a portion of our time doing things to help make the lives of other cancer patients and caregivers better. It means planting flowers in the spring, smelling them in the summer, and raking leaves in the fall. It also means sitting in front of a warm fire on a winter day with a good book and a nice glass of wine. And, of course, it means having those memories. In other words, it means that we are experiencing the best days of our lives.
In surviving multiple myeloma, we know how lucky we are and are grateful for all that we have been given. We recognize that having been given the gift of more time together, we have responsibilities, not only to ourselves, but to others. We have the responsibility to take good care of ourselves, physically and emotionally. Most importantly, we feel that we have a responsibility to do whatever we can to make sure that the research into this disease continues so that others can survive as well. In other words, we have the responsibility to pay back.
How you describe yourself and your journey through multiple myeloma is an individual choice. As for me, I will continue to say that I am surviving multiple myeloma. To me that indicates that I am winning and that
I have every intention of staying in the game.
Life is good.
Allan
Sources:
Sotham, J. (Fall, 2017) Defining Survivorship. Cure, 62-66. Available online at https://www.curetoday.com/publications/cure/2017/fall-2017/defining-cancer-survivorship.
National Cancer Institute, Office of Cancer Survivorship. Definitions. Available at https://cancercontrol.cancer.gov/ocs/statistics/definitions.html.
